Follow up visit next week. Suggestions?
 

So I guess I'm just asking for general suggestions/input.

I'm about 6 weeks post-concussion, PCS here. I got headbutted accidentally by my boyfriend. I've had 2 concussions in the past, but one was 4 years ago, the other was more than 8.

I've been having really bad migraine like headaches, with light auras, nausea, dizziness, loss of appetite, weakness, fatigue, a weird "vibrating" feeling in my brain, eye pain, trouble seeing (but I can strain or squint and see fine), issues running into things, typical PCS symptoms, and a PCS diagnosis from a neurologist.

I've been taking Topamax, 50mg 1 a day, then 2x a day, then 3x a day, increasing every week. I am also taking Buspar (anti-anxiety, non-barbiturate) folic acid, b12, b6, my omegas, and vitamin C, melatonin, and vitamin D. I feel like I am not getting much better, and I am an emotional wreck. Does anyone have any advice? I am trying to limit my activities, but I am a recent college graduate, and I am working "full" time at a part time job trying to make money until I start grad school in late August, but I've had to quit one job, and it seems I can only work about 4 hours at one job until I have to leave, and then I end up having to stay home the next day because I am just incapacitated.

I am truly powerless. I don't know what to do. I feel like I don't have a lot of support. I am 5 hours from my neurologist (weird insurance issues, I am still on my parents'), I have very little support from my parents (despite my mom recently having 2 tbis in a short period of time and having horrible issues, she has decided to take it out on me rather than sympathize), and my boyfriend feels powerless, but has been the only support I have right now. I just want to sit at home and cry all day.

AND I can't eat anything because I'm never hungry!

I am so sorry, I feel so pathetic. I just have nowhere to go right now.

The best advice I can give you??

If you can only work 4 hours and are incapacitated for days after.... that's your brain telling you to stop working.

Now, as a grad student myself and someone who just had to leave a full time job for the same reasons, I understand your fears and concerns. How to pay for things, how you'll survive when you start Grad school etc.

However, if you don't make your brain's recovery the only priority, (which may mean not working and financial struggles), you may increase the likelihood you won't be participating in your classes this fall.

I know it's a scary thought to not work, because it leaves everything up in the air. However, I tried to go back to work and had a complete relapse of symptoms and feel like I"m back to where I was months ago. I too would like to be able to start classes again in the fall, but I haven't even been able to go back and finish the end of the spring that I missed when this all started.

Sorry if these seems like tough love, but if you dont' take care of yourself... Grad school will be irrelevant because you will still be too sick to go.

I wish you the best and speedy recovery so you can continue on with school and get back to work quickly, but honestly the best advice I can give is that if work is triggering PCS, then you need to stay away from work for a while.

Upon re-reading that, I realize it may come off kinda harsh. Believe me, that is NOT my intent. I just know what you are going through... how frustrating it is to have your life interrupted so thoroughly... and I know that might continue, if indeed work is pushing you harder than your brain is ready for right now, because you brain isn't getting the rest it needs to heal.

All the best to your recovery

I am so sorry that you have to go through all of this. PCS is just a horrible experience. A lot of the emotional stuff that you are going through, I believe, is because of your injury.

I can relate to so much of it. It is good that you have found this site, because there are so many people here who truly want to help and who have a wealth of experience - again, unfortunately - in this area.


What you do have going for you is your age, because according to what I understand, younger brains can heal better. However, you have to give yourself time to heal. Six weeks is really early in the healing process. If you want to heal, you need to stay home and rest. Working is causing symptoms. I am not a doctor, but from my own experience as well as from what I have learned from the many wise people on this forum, I really feel that if you truly



want to heal, the first thing you have to do is to stop working and rest.


You said that you are taking Topomax. Is that to prevent the migraines? If that medicine is not working, there are others to try.

Also, you mentioned several B vitamins that you are taking. If you do take separate B vitamins, you do need to take a B complex to make sure that you keep the B's balanced. That's what I've been told.

Because I have trouble with the preventative medications for migraines, I have been taking vitamin B-2. There have been studies done about it helping to prevent migraines. If you Google migraines and vitaminB-2, you can read about it.

I don't use as much B-2 as they used in the study. I use 25 mg of Solgar's B-2, and I even cut that in half. I still get headaches every day, but they are milder.

There are 2 books that I would highly recommend to you that were written by doctors who had PCS, and they explain it really well. They have many ideas about dealing with it. One book is Brainlash by Gail Denton, PhD, and the other is Coping with Mild Traumatic Brain Injury by Diane Roberts Stoler, Ed.D., and Barbara Albers Hill.

I wish you all the best, and I hope that you will be able to take the time to allow yourself to heal. ShellyK

Right now, I'm just worried about feeling better this summer. I have a graduate assistantship and a job lined up for fall and spring, and I have my tuition paid. I am just looking for medical advice right now. I haven't even thought of not going to school as an option because, well, I am not ready to consider that thought right now!

Thanks, I'll give the B2 a try!

It's really hard, I am trying to be so independent and just do everything on my own, so this set back is a lot for me to handle right now...UGH! lol

Your boyfriend should be working two jobs so you can stay home and rest.

Accident or not, he messed up your life. He should be working hard so you can recover.

I'm very independent. It was an accident, he is not responsible. The blame is not to be put on him. This is not very helpful at all. He is also in school and unable to work two jobs.

First of all, it does sound like rest would help. I did not rest for the first couple of weeks after my concussion because I didn't think I could afford to. In the end, I made my symptoms so much worse that I have been off work for four months. The kind of rest they are talking about is not so much physical rest as BRAIN rest, which involves little to no reading, thinking, etc. The sooner you can give your brain a solid chunk of this, the sooner you can start to improve.

Also, have you had your vision tested? I recently had a vision efficiency evaluation and started vision therapy, which seems to be helping with reading, computer work and other visual tasks. You can find optometrists familiar with brain injuries at *edit*

Good luck. I know it is so frustrating to not be able to do as you planned, but in the end it may be better to take some time off so that you can go back at full strength than to try to continue limping along indefinitely.

Eowyn

I'm new here but I don't think there's anything for you to apologize about. The feelings of helplessness and anger seem to be common and I am afraid I don't have much to offer you except empathy and support - but they're there if you need them. I finished my MBA about a year ago and can't imagine working f/t and going to school so my hat is off to you.

I was in a car accident 8 months ago (wow - can't believe it's been that long - or that it has ONLY been that long) and hit my head on the driver's side head rest. Didn't lose consciousness but I began to notice I has having problems concentrating, focusing, multi-tasking several weeks afterwards. I'm seeing a neurologist and have a follow up tomorrow.

I wish you all the best in your recovery and progress. :)

CG

One 'symptom' (if you can call it that) that I've noticed about my PCS is that it seems to have affected my insight - I tend to want to try to keep doing things even when I'm clearly not up to it.

This started from the initial concussion when I tried to carry on playing soccer even though I could hardly walk, and continues even up to last week when I clearly needed to just go home after a relapse but needed quite a lot of persuading from my manager to accept this fact.

I don't know whether it's a psychological thing about being in denial, or something organic, but it sounds to me like you're having a similar problem. My advice is if possible to make sure that your parents and if necessary your grad school really know the seriousness of your situation because you really need more help and understanding than you are getting.

My parents also don't understand my PCS but luckily I have savings which should last me about another month and a wife who is earning. When I broke my kneecap when I was younger though I couldn't have got by without moving back in with them for a few months. They were very understanding about that because they could see it!

If I was in your situation I would consider trying to move back in with parents to save money and recover and then if necessary starting grad school late. If this isn't possible it might be worth borrowing a little money just to give yourself some recovery time. This is a major crisis and needs extreme solutions - trying to 'manage' at work at this stage will, in my experience, make you worse, not better.

If this isn't possible for some reason then apologies, just trying to think of solutions!

All the best with everything, we feel for you here.

I feel for you! I knocked heads with my brother, and - while the initial hit was painful for both of us - he's still "normal" and I'm not.

I also understand the independence thing. Something to think about from not-at-all-fun personal experience... sometimes it's better to choose to give up some independence than to wait for things to get so bad that you have no choice.

I've lost a lot of "pride" since this happened. :(

My brother has been very caring and helpful - but it has been difficult for him as well. Almost overnight, he lost the sister he had always known and neither of us knew what had happened. While I often resented him for not helping more - it was difficult for him to know how to help (I had little self-awareness or ability to communicate effectively) or how to handle the emotional monster that I had become.

As I begin to recover, I realize that he went over and above; the only reason he didn't do more was lack of knowing what could be done.

So... hang in there... if you can, allow people to help you... you'll make it!